Race, ethnicity, language spoken at home, household income, number of functional difficulties, and immigration status are among the demographic, socioeconomic, and cultural factors that affect access to health care and coverage for children and youth with special health care needs (CYSHCN). Title V programs, Medicaid agencies, and family leader organizations have developed strategies to promote health equity that go beyond translating materials. In an effort to ensure health care access and coverage equity, states have developed partnerships that pool resources and leverage organizational expertise, ensure staff is representative of the population served, and maximize outreach and enrollment efforts to reach the most vulnerable CYSHCN.

Through an Infrastructure and Capacity Building program, MassHealth, the Massachusetts Medicaid program, provides grants to community health centers and hospitals to do outreach and enrollment activities in their communities. Many of these providers are located in communities that are disproportionately low-income and/or communities of color.

As part of the Mississippi Department of Health’s Office of Health Disparity Elimination strategy to address insurance inequalities, the Mississippi Department of Health became an Affordable Care Act Champion for Coverage. As part of that work, they refer families to navigators or Certified Application Counselors.

In order to ensure families from Native American communities are aware of Medicaid and CHIP program eligibility for their children, the North Dakota Healthy Steps (CHIP) program contracts with a vendor that specializes in outreach to Native American populations. Good Health TV, one of their outreach initiatives, is a health and wellness network that broadcasts to the Indian Health Service and other tribal clinics across the state, and promotes health-related topics specific to Native American populations. This specialized vendor has produced two creative video segments to air on the network promoting Medicaid and Healthy Steps. They also employ a woman from the community who provides “boots on the ground” outreach to the community, specifically to tribal employers. In addition to her work with employers, she conducts outreach and helps families enroll in coverage at job fairs. She also assists schools with outreach and enrollment as part of their back-to-school campaigns. View the Healthy Steps Video.

The New Mexico Medicaid program has a Tribal liaison that travels around the state to health fairs in tribal communities. The Medicaid Managed Care Organizations (MCOs) are also required to have a Tribal liaison that does additional targeted outreach to tribal communities. The tribal liaison at Medicaid typically attends about 15 health fairs each year. She also attends many other meetings to share information about Medicaid.

The Wyoming Medicaid program hosts “baby showers” in each county. These events bring together all the Department of Health programs serving Medicaid, CYSHCN, waiver recipients, and all the public health and nurse partnership programs in the county in one spot in an effort to reach pregnant women. These efforts attract Spanish speakers and are particularly successful in counties with special populations such as Native Americans living on reservations. Participants who visit a certain number of booths receive a $25 incentive card. Medicaid pays for the gift cards for Medicaid enrolled families.

Family Voices of DC has staff that speak Spanish, French, and Amharic (the official language of Ethiopia). They conduct outreach and workshops in families’ native languages, and translate the responses back to staff who speak English so they can learn from families. This has created better connections between staff and families who do not speak English as a first language, or who do not speak English at all.  

Staff at the Georgia Family-to-Family Health Information Center (F2F) work closely with refugee, Hispanic, and East African populations. They also partner with the Georgia Department of Public Health by placing F2F staff in specialty clinics, including clinics located in underserved areas of the state. This way when families come for their medical appointments, after they see the doctor they see the F2F staff who can get them connected to services and help them navigate Georgia’s healthcare and education systems.

Indiana Family Voices has some funding from their Title V program to work with underserved families, especially the Spanish-speaking population. They have three bilingual workers. They also do outreach to the Amish and Burmese populations in the state.

Staff at the Iowa F2F recognized that many of the individuals with disabilities they serve are members of vulnerable populations. To ensure everyone has the information they need, and a safety net, the staff has formed new partnerships with faith-based organizations, private healthcare systems, and foundations focusing on the social determinants of health to reach at risk, vulnerable, and low-income groups.

Parents’ Place in Maryland conducts outreach to the large number of undocumented families in the state. They host multi-session family leadership trainings in Spanish so that families have a better understanding of the special education and health care systems and are able to build their own self-advocacy skills and advocate for their children. They also conduct an annual conference entirely in Spanish where they talk about health care financing so families are better able to get services. Staff is also working to develop relationships with Federally Qualified Health Centers (FQHCs).

In Montana, an effective program for supporting families in the highest need schools is the Schools of Promise program. One component, a school-based mental health model (the Wraparound Process) is implemented by wraparound facilitators in six tribal communities. The F2F staff connect with and support the facilitators on or near the reservations who are part of the community and who have been trained to assist families with wraparound services.

Family Voices of North Carolina received funding from the national Family Voices Polly Arango Mentoring Initiative to work on increasing diverse family leadership. Staff from Family Voices of North Carolina worked with a group of Hispanic/Latino families to create a support group in the central part of the state. It was so successful, other families approached the staff to replicate the model in their counties.

As part of the Oregon F2F’s efforts to expand its cultural and linguistic competence, staff identified navigator programs across the state who represent different communities. This helps staff know the navigator entity that would be the best match for each family that needs assistance with navigating Medicaid, CHIP, and private health insurance plans. For example, they know the navigator programs that have experience working with Somali communities.

Circle of Smiles is a project that works to improve oral health in Indian Country. The South Dakota F2F visited with the Circle of Smiles team at an all-staff meeting to provide information and resources that would assist the families they serve in connecting with needed supports and programs to address unmet needs. This helps Native American families and the professionals serving them who are often out of the mainstream information loop that provides access to many families of children with special health care needs. The South Dakota F2F partnered with SD KIDS COUNT, Beacom School of Business, and the University of South Dakota for a critical examination of the 2009/10 National Survey of Children with Special Health Care Needs (NS CSHCN) data for Native American children with special health care needs (CSHCN). While this subgroup of CSHCN is not generally reported nationally due to small population size, they comprise 14% of the children in South Dakota. The data were used to develop a Kids Count fact sheet about Native American CSHCN in the states of Arizona, Alaska, Montana, New Mexico, North Dakota, Oklahoma and South Dakota.